Privacy of study participants in open-access Health and Demographic Surveillance System data: A requirements analysis for data anonymisation (Preprint)

BACKGROUND Sharing and anonymising data have become hot topics for individuals, organisations, and countries around the world. Open-access sharing of anonymised data containing sensitive information about individuals makes the most sense whenever the utility of the data can be preserved and the risk of disclosure can be kept below acceptable levels. In this case, researchers can use the data without access restrictions and limitations. OBJECTIVE The goal of this paper is to highlight solutions and requirements for sharing longitudinal health and surveillance event history data in form of open-access data. The challenges lie in the anonymisation of multiple event dates and the time-varying variables. A sequential approach that adds noise to the event dates is proposed. This approach maintains the event order and preserves the average time between events. Additionally, a nosy neighbor distance-based matching approach to estimate the risk is proposed. Regarding dealing with the key variables that change over time such as educational level or occupation, we make two proposals, one based on limiting the intermediate status of a person (e.g. on education), and the other to achieve k-anonymity in subsets of the data. The proposed approaches were applied to the Karonga Health and Demographic Surveillance System (HDSS) core dataset, which contains longitudinal data from 1995 to the end of 2016 and includes 280,381 event records with time-varying, socio-economic variables and demographic information on individuals. The proposed anonymisation strategy lowers the risk of disclosure to acceptable levels thus allowing sharing of the data. METHODS statistical disclosure control, k-anonymity, adding noise, disclosure risk measurement, event history data anonymization, longitudinal data anonymization, data utility by visual comparisons. RESULTS Anonymized version of event history data including longitudinal information on individuals over time with high data utility. CONCLUSIONS The proposed anonymisation of study participants in event history data including static and time-varying status variables, specifically applied to longitudinal health and demographic surveillance system data, led to an anonymized data set with very low disclosure risk and high data utility ready to be shared to the public in form of an open-access data set. Different level of noise for event history dates were evaluated for disclosure risk and data utility. It turned out that high utility had been achieved even with the highest level of noise. Details matters to ensure consistency/credibility. Most important, the sequential noise approach presented in this paper maintains the event order. It has been shown that not even the event order is preserved but also the time between events is well maintained in comparison to the original data. We also proposed an anonymization strategy to handle the information of time-varying status of educational, occupational level of a person, year of death, year of birth, and number of events of a person. We proposed an approach that preserves the data utility well but limit the number of educational and occupational levels of a person. Using distance-based neighborhood matching we simulated an attack under a nosy neighbor situation and by using a worst-case scenario where attackers has full information on the original data. It could be shown that the disclosure risk is very low even by assuming that the attacker’s data base and information is optimal. The HDSS and medical science research communities in LMIC settings will be the primary beneficiaries of the results and methods presented in this science article, but the results will be useful for anyone working on anonymising longitudinal datasets possibly including also time-varying information and event history data for purposes of sharing. In other words, the proposed approaches can be applied to almost any event history data, and, additionally, to event history data including static and/or status variables that changes its entries in time.